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Jill
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"Life is a series of goodbyes and hellos" Billy J.
  
 
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ER Question
« on: Nov 17th, 2002, 3:58pm » |
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Hello...I just erased this message somehow, so I have to do this again. Oh well. Sorry to bother you again but I have a quick question....
I am still battling the beast all the time it seems, thought my new attitude would have scared him away, guess not. I still have more than eight a day with shadows in between, all hits around a ten, very tiring.
Anyways, I went away this weekend with school to a retreat. It probably wasnt the smartest of ideas to go but I was determined that this beast wasnt going to run my life. I am not very bright sometimes, I should just be hiding in a cave right now. My head never got a break and the whole weekend was shot.
Sorry, onward with this (I tend to ramble sometimes). Last night I got hit very very very badly, couldnt get to even cease some with three shots of imitrex ( I know, you are not supposed to do that). After scaring my roommates to my screaming and rolling on the floor, grasping my head I was taken to the ER.
I dont remember a whole lot but I know the general idea of what happened. The staff there evidently did not know what was going on and the people I was with did not know how to explain it..I dont know. They were trying to run blood tests, a CAT scan and other things but that is no easy task when in a cluster and them not giving me any meds. Finally someone realized, I think, what was happening and they started trying to fix it. They put me on Oxygen and started pumping full of drugs until I was very very sick. It was not a very nice thing at all and after six hours, it finally went down to a point where I left.
Today, I am back at school..finally, but I am still sick from all of the drugs they put in me and because I have a bad chest cold but still. I feel very funny and out of it today, the beast still striking his evil thorn of fire at me...not very pleasant today.
I dont like ER's but I fear that I will be seeing more of them because the pain has become so very bad, worse at night. I want to fight, kick his butt off of that mountain but Iam so tired that it is harder to do alone. 
So, I guess I need to ask the question, like I said, I tend to ramble. How do you handle the ER? How do you get them to treat you (had this problem before)? I dont have anyone directly here that understands or wants to, so I am kind of on my own. How do you get them to understand or realize what is happening so that you can treated quicker? 
I hope that it is okay that I ask these question, I am not sure how to go about it if the need come that I go again. As much as I dont want to, I believe that for the sake of not taking out my eye or putting something in my head, I am going to have to.
Thanks for everything, you guys are the best by far!
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Jarvis
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Re: ER Question
« Reply #1 on: Nov 17th, 2002, 11:21pm » |
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Jill, I dont go to ERs any more cause they allways failed me, however I suggest you just tell them you got clusters and dont need any tests if they have been verified allready. Just relief is all you want. "Then say please". Friends will seldom be able to understand your pain unless they are here on this site. In time you will find ways to deal with the pain, be it drugs or otherwise. Hopefully you may find ways to even abort with a good docs ways. I suffer greatly as well but I will say that screaming seldom helps. you know that they will come and "if you can remain calm" and maybe hide and pace they will relieve soon. I am just ramblin here too not really having a clue as to your situation. Luck.. most universities have pretty good medical centers if thats where your at, use them they are only too happy to help.
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ScorpionHand
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Jill-
I did pretty much the same thing as you. The last cycle I was in, I felt strong enough that I could plow through even with pain. I started to get irrational trying to do things like drive (went back home immediately and paid the price) and any other normal functions. From my experience, stick to the tried and trusted when it comes to behavior. My pain is always more intense when I do anything outside of my usual dance - pacing until I can bear to sit and then ride out the remainder with a finely tuned posture.
IMHO- the ER will do you absolutely no good. Usually by the time your in and getting treated, you could have sweated it out on your own, only now you have more bills to pay. I know the ER gives you faith that the pain will end, but as long as it is clusters, you can be sure the pain will end. Even if the pain is all day and believe me, I'm no stranger to all day pain - can't tell if it's another cluster, or the same one flaring back up - a 9 for 2 hours, down to a 5 for 15 minutes, and back to a 9 for another 2 hours and so on... Your better off keeping your money.
Good luck - PFDAN
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Charlie
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Re: ER Question
« Reply #3 on: Nov 18th, 2002, 5:53am » |
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Jill....Damn sorry and I wish I could help. How about this:
Since no one in the ER believes us, I would think some form of medical alert necklace or bracelet would be helpful. How much are they now. $20 or so?
There isn't room for much but the very first word should be "Clusterheadache." You people can come up with the other stuff. When I travel, I use a necklace for my epilepsy. I also use a card that is full of detailed information. That would be even better and a doctor’s name would help too. This ought to at least give you a fighting chance when they assume drugs are your thing.
Keep up the fight Jill.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Axis
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My frist trip to the ER was a joke, They thought I was just another drug seeker and kept me waiting for 7 hours before a Doc came in to talk to me, By then I didnt need him.
But on the O U C H site there is a form I DLed and took to my Doctor and had him copy it to his letter head and fill it out, It tells the ER staff who you are and that your for real and what meds your on as well as what meds work for you.
My 2nd trip to the ER, I had to have help just to get out of the car and could not say too much, My wife gave the ER staff my letter and 10 mins later I was in a dark room with a bag of ice, Now it still took close to an hour for the doctor to get to me (better then 7 hours) By then I had droped from a kip 10 to bad shadow, But by the time the discharge papers were done I was in another attack and the doctor hit me with a shot of trex and offered me some pain meds which I turned down, So he talked me into takeing a shot to help me sleep that night which did seem to work for about 4 hours.
That form filled out by your Doctor will make a big diff when you have to go to ER.
Since I'm PF now I hope to not ever have to go again )
Rod.
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Karla
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Re: ER Question
« Reply #5 on: Nov 18th, 2002, 12:14pm » |
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Dearest Jill, You and I are very similar in the fact that we are both chronic, get hit 8x or more a day, and have nothing that works for us but imitrix. I usually am in the ER one to four times a month. It used to be hell going because I would have to explain my diagnosis, then explain that I didn't have allergies and a compazine drip wasn't going to work except to make me sick and that oxygen didn't work and that I had maxed out on the imitrix and had already taken percacet and needed something stronger. I was getting that drug seeker look and attitude. Finally a dr in the ER stated that they were not going to treat me anymore until I get a letter from my dr with a treatment plan on it. So my neuro wrote a letter explaining I had clusters and was non responsive to all treatments. That i did respond well to narcotic injections and that I needed high doses and fast treatment. After that I never had a problem again. As soon as I walked in they would get me back to a room, inject me with morphine or dilaudid and wait for it to work and then send me home. My drs. letter made all the difference in the world.
Also I take my husband with me most the time and he advocates for me as needed. However, now the drs and nurses know me by name and no I have clusters. so I don't need to worry about explaining. I would recomend you find 2 people willing to take you to ER. One as primary and the other one as back up incase the first one cant take you. Explaine to them everything they need to know and then you will have an informed advocate when you need to go in. Good luck Jill,
Love,
Karla
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Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
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stedmom
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Re: ER Question
« Reply #6 on: Dec 4th, 2002, 12:02pm » |
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Jill,
As an ER nurse, and a CH sufferer, I can look at your dillema from both perspectives. First of all, I know that feeling of desparation and hopes that the ER can make it all better. But as you also know, sometimes ER's are so slow that by the time you are seen, your pain will be gone or at least to a level you can tolerate.
I also know from experience as an ER nurse, there are many people who are truly in pain and many who are just seekers. Unless you can convince them that you are genuine, you're going to be labeled as a seeker if you show up in the ER on a regular basis. Even with a letter from your doctor, you may still be labeled, as there are certain physicians who are enablers.
My best recommendation to you is to stay away from the ER if at all possible. I dont think that even ER docs have a good understanding of CH's and their instinct is to do a major workup to find the source of the pain. But if you do go, always remember this, you have the RIGHT to refuse any test or treatment. I remember my one and only trip to the ER for a CH, and it was before I was a nurse. The doc wanted to admit me and start me on a drip, but the NURSE (who is your advocate) knew me and knew I wasn't a seeker, advised me of my right to refuse. He got on the phone to my primary MD and got the medication I needed, and the ER doc never showed his face in my room again. So, I think my point is this, if you feel you MUST go to the ER, remember your rights, and make sure you have a nurse who is your advocate. If not, ask for another nurse!
I hope this has helped!
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Hound_Dogg
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Great reply, Stedmom...A lot of people don't understand their "Patient's Rights", when they go to the E.R. or even if they get admitted.
Jill, I would make it clear to your G.P. to insure you have a standing order of Trex or O2 at His/Her office. My Doctor has in my records, that I can walk in at most any time, and the nurse will give me a shot of imitrex. Of course, I have to be responsible and make sure my scripts are called in, when needed. But it sure is a Godsend when my cycle has just started...
Good Luck
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